I’ve been struggling recently to understand just what a diagnosis means to those who have a mental illness. I have been diagnosed with a few (depression, generalized anxiety, adult ADHD), but sometimes I don’t know that this is accurate. Most of it fits, but the medication I am on better aligns with other disorders, such as Bipolar II or Borderline Personality Disorder (BPD). And when I look back at the past 10 - 15 years, I can see indications of where these other diagnoses may have been more appropriate. But when I was seeing doctors and therapists, I may not have been exhibiting all the symptoms (such as mania), so they found another explanation. I am not questioning the abilities of my healthcare providers in the least. This is more of a philosophical question to ponder. (Note, only a certified mental healthcare professional can issue a formal diagnosis. This article is not intended to encourage self-diagnosis. Rather, I want this to encourage asking questions.)
Driving away from the Panera Bread on a late Monday afternoon, I was elated. To think, she kept our brochure for a month after she got off the Behavioral Health Unit! That is so awesome! I thought to myself.
Every other Friday, I give a talk to the patients on the Behavioral Health Unit at a local hospital. I tell my story and talk about the support groups and classes National Alliance on Mental Illness (NAMI) offers. The patients hear there is life after a mental illness diagnosis.
Anne* had been a patient about a month ago. She kept our brochure and contacted us, which is a positive difference from my own past experience. When I was on the Behavioral Health Unit ten years ago, no one told me about NAMI. Seven tough years went by before I heard that NAMI could help. When we started the NAMI affiliate in Brown County, I was determined I would do for mental illness patients what no one had done for me. As we say in NAMI, “If I can make a difference in one person’s life, it is worth it.”
You or someone you know is struggling with a mental illness. According to the National Institute of Mental Health, one in five individuals wrestles with a mental illness.1 Of the 43,576 individuals in Brown County2, nearly 9,000 struggle with mental illness. But within our often silent struggle, there is hope.
My name is Danei Edelen. I am Executive Director of the newly formed Brown County Ohio affiliate of the National Alliance on Mental Illness (NAMI). NAMI is the largest grassroots organization in the country whose members are individuals that live with a mental illness, like me, or someone who lives with someone who does, like my husband. NAMI calls this “lived experience”. NAMI provides support, education, advocacy, and public awareness so that all people affected by mental illness can build better lives.
Starting a grassroots mental health organization is kind of like creating your own puzzle. One of the most challenging pieces is managing your own mental health in the process. “I think I am doing well,” I told my therapist as I was leaving his office. “Much improved from last month!” he replied. As I dodge raindrops on my way out to my car, I know we are both right. I have been battling medication adjustments for the last year. However, the recent medication changes my psychiatrist made seem to be working. I still have some anxiety, but as my therapist said, “Some anxiety keeps you on your toes”. I am comforted by the fact that my boss recognizes that living with a mental illness is a daily struggle. In one presentation we did together she said, “Living with mental illness is a full-time job.”
Another piece of the puzzle is a lack of competition when it comes to resources in a rural county. As I plug in my phone at home, I see that we don’t have any internet access. “Still?” I say to my husband. “Why does this happen every time it rains?” As an affiliate, we are not big enough to have a formal office yet.
I can’t help but think about the bookmarks that my sister and I are working on. Rats, I think to myself. Will we get them completed in time for the Health Fair? You don’t have the infrastructure of an affiliate in a larger county. You only have a handful of people. You have yet to start fundraising. You see so many needs, but you don’t have the resources to fill them yet. Lack of infrastructure missing piece in the puzzle.
Two hours before the support group meeting tonight, I think to myself. I have got to remember to give the key to Vera* so she can cover for me on Thursday. Because of how the calendar falls, we have two support group meetings in the same week! I have to go speak at a local organization. Vera will have to cover for me on Thursday night for the Connection Support Group meeting. I have to find out how Brittany* is doing from Vera, I think to myself. She has been going through a rough time.
When Some are Missing
Because income levels and resources are more limited in a rural county, people can fall through the cracks. Some of the attendees would like for us to offer more of the advanced National Alliance on Mental Illness classes. We simply don’t have the people to do so. “It’s not about where you see a need,” one NAMI Program Director told me once, “It’s where you have the volunteers who are excited about meeting that need.” It’s the “grassroots puzzle piece” in a grassroots mental health organization.
At least we have people coming, I think to myself. I remember in the beginning when it was just me and one other woman. I thought she stopped coming because she was so tired of just seeing me! Then I got a text from her after I sent her a reminder, “I miss you! I’ve just been crazy busy.”
As I look around the table at the three other faces as we begin the support group meeting, it hits me. If I hadn’t worked to get this NAMI affiliate started, none of us would be here. We may still be small. We may have our daily challenges. Some people may want us to do more than we can. And yes, I will have to struggle daily with my own mental illness, but we are making a difference in people’s lives. People are the most important pieces of the puzzle. That’s what really matters.
* Names have been changed to protect identities.
I woke up this morning to the sound of rain on my window pane. “Great.” I thought, “My son and I are supposed to distribute brochures to the local libraries in the county.” I took my medication and went back to bed for about an hour. Taking medication in the morning is a new development for me. I am used to taking all medication only at night. But lately, I have been battling bipolar depression, so the morning seems to be a better cadence.
Dealing with bipolar depression sucks. “I just worked out twice today, but I feel like every cell in my body is screaming,” I texted to my sister at one point. Even when you have good things happen to you, you feel like you are in this insulated wall, you can’t feel anything. Someone is silently screaming inside your body.
A month ago, I posted about Self-Care and Suicide Prevention after the deaths of Kate Spade and Anthony Bourdain. So what has gone on in the past month? Well, the conversation around suicide prevention has gotten stronger. The tragic events spurred activity like the CNN Town Hall which was a most welcome sight to behold, getting national attention like this subject so desperately deserves. So what now? Now, we keep the conversation going. I want to keep up the theme of self-care, since it is so critical to our own well-being, emotionally and physically. I wanted to dedicate 30 days to self-care and report back on my result. There are a handful of things I have tried to do over the past month to help regulate my state. Please leave comments below on how you practice self-care. I’d love to compare notes!